I had the privilege last night to attend Duchenne UK's fundraising dinner. While watching an incredible video highlighting the struggles experienced by parents when their children are diagnosed with DMD, hearing Emily and Alex talk about what they have achieved, and seeing the resultant outpouring of significant sums of money from donors I was struck by one thing in particular. The entire Duchenne community became better off when Alex and Emily decided they weren't just going to accept a Duchenne prognosis and everything that entailed.

Of course, Alex, Emily and everyone else involved in Duchenne UK stand on the shoulders of many parents that came before, like Pat Furlong, Nick Catlin and Janet Hoskin just to name a few, who have equally been a remarkably positive force in the community.

Alex & Emily have clearly utilised every asset they have, their own skills, passion and strength of will, to their mission to find treatments for DMD. They have utilised every contact they had, every friend and family member, and all of their friends' friends too. Everything they have been able to access, they have used for this singular purpose. All the while dealing with the DMD diagnosis becoming a living, breathing reality. It's hard to appreciate this fully when the ultimate aim has not yet been realised, but the results so far have been truly incredible.

I don't expect to see much personal benefit from this work because my DMD progression has advanced so far. I'm still hopeful that maybe some of the work will pay off in finding cardiac treatments that may extend my life, but it's uncertain at this time. For Alex & Emily's sons, although there is every hope that the impact of Duchenne can be massively reduced, their lives have already been shaped by DMD and there are some things they won’t get back. They can still have excellent lives like many of us adults with DMD do, but they will have to deal with some significant hardship.

This of course means there is a tremendous urgency to make progress for Jack, Eli and all the other kids, to reduce the impact of DMD as much as possible. But what it also means is that the greatest beneficiaries of Alex and Emily's work won’t be their sons, but the generations that follow. Because of Alex and Emily I have no doubt that in the future we will have treatments so sophisticated that a DMD diagnosis will be insignificant, at least wherever the treatments can be accessed.

Alex & Emily had a choice to accept DMD and make the most of the time they had. They chose not to do that, and the day they made that choice was a day that the whole world of people dealing with Duchenne became immensely more powerful. I hope that in years to come their work, their sacrifice and their impact is remembered, alongside the others that came before and those with DMD who weren't lucky enough to benefit. This is not why they do this, but it seems only right.

NOTES FOR EDITORS

What is Duchenne Muscular Dystrophy Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK? Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.

Duchenne UK is entirely reliant on donations to fund and accelerate the search for treatments for DMDPlease help us and donate today:

Most read

Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

We are proud to share with you our first ever Impact Report, read about the very real impact we are having and the many things we have been working on over the past six years to end Duchenne.
Read more

We will always store your personal details securely. We’ll use them to provide the service that you have requested, and communicate with you in the way(s) that you have agreed to. Your data may also be used for analysis purposes, to help us provide the best service possible. For full details see our Privacy Policy or contact us on [email protected]